lasel22- I hope you visit with Dr H went well....do keep us posted and I understand why you do not come here that often, we do need a break from it , but unfortunately even if we do not visit this site, we still have to deal with the results of the condition....reading how others are finding ways to cope may help you put things into perspective so you can get rid of the anger that will keep you from finding/seeing your new path.
Hope to hear from you again soon.
Thank you Kerri and Selma for your encouraging words. I’ve been dealing with chiari/EDS/instability since 2014 and as you know it can be difficult not only on ourselves but our family. The funny thing is I don’t check this site much now because sometimes you just need to get away from it (Selma thank you for being there for everyone who comes here and asks questions, you are so helpful) but I did check it today as I just arrived in a hotel in Maryland near Dr. Henderson’s office as I have a follow up appointment tomorrow. I’m not in the best of moods having to deal with this and reading your post has helped me. Thank you. I’m definitely not at the point you two are with accepting my situation, I tend to be in denial a lot, but I do try to make the best of it. I’m still angry though. I can’t seem to let go of the anger when I think about wanting my old life back. I know I need to. Anyway, thank you for reminding me I’m not alone in this and others are dealing with the same thing and I always try to remember it could be worse.
Also, Kerri, I hope your recovery is going well and you are seeing more improvements and getting stronger every day.
Well said I truly wish i could be strong. My symtoms are so bad I feel lightheaded all the time now along with the head pressire it sucks so bad... On top of that the short of breath feeling i have has gotten worse too..
AMEN !!! I agree 100% with your sentiments .....I know how difficult this road is as I also travel it with you all.....and I also know that with time, if we can be patient we will see benefits from the surgery and that we can find a new path and course in life, it may not be one we may have considered before getting to a point our path had come to an end, and we needed to find the next one to follow.
In learning what I cold no longer do, I also found things I never thought I could do....we just need to be open to see where our Chiari path is leading us.
You are right to say you have your Chiari family and know we are always here if you need us.